Monday, November 7, 2011

Dollhouses and Haystacks

I don't write much about my Big Lug. He's a private person and, after all, I am the one clinging to cool, not him. But in life, events & moments happen that forever change the way you view your significant other - for both the good and the bad. Major life moments deserve acknowledgement.

I remember a Sunday years ago - BC, BM, SG (Before Children, Before Marriage, Still Giddy) - my husband and I were sitting in Church together. I was listening to his deep voice reciting the responses and I looked over at him as he faced the altar and thought to myself: "I can see myself sitting next to you for a lifetime".

After our first baby was born, and I watched him hold all 6 lbs of him in his giant hands, I was totally overwhelmed with emotion as I realized we were really, truly a family.

Some life moments aren't quite so Hallmark Movie Channel. There are little moments, tiny events... that sneak up on you and take your breath away before you even know what hits you.

When I found out we were having a boy, I was over the moon. I could see the joy in my husband's eyes as he flashed forward to future years filled with playing catch and going fishing. When John was born, he was breathtaking with dark, thick hair and almond eyes. He looked so much like my Big Lug that I was tempted to name him "Little Lug".

As John got older, he struggled making connections with people. Even his parents. Instead he preferred to connect with books, computers, televisions, trains, gears, you get the picture. Eventually, we were told about his autism, which made it understandable, but not particularly easy to understand.

As the years progressed, I was thrilled to see John develop his own unique personality and interests. Although he never said a word, I watched as my husband's hoped-for and dreamed-of typical father-son relationship faded away.

John is a quirky little dude. The years between 4 & 6 were really quirky. He didn't have a natural sense of play, so he copied his sister. He didn't go to daycare, so his all-day role model was me. The result was a boy that liked to play with "girl toys" sometimes.

My Big Lug is a man's man. He is old fashioned. He likes meat & potatoes. He believes in a hard day's work. He considers a hand shake as good as a notarized contract. He likes to do business in person, eye to eye.

One Saturday when I was under the weather, he took the kids to his nephew's basketball game . My son wanted to sit where he could see the cheerleaders. And do the cheers.

My husband - clad in his overalls in a packed gym in the middle of rural America - took his kids to sit by the cheerleaders and let them both do the cheers and dance around.

I know it wasn't easy. I know it was far beyond his comfort zone. And I certainly know it isn't what he expected when the doctor said "It's a boy!". But he did it, and I love him for it. It was a life changing moment for me. Because he, who prides himself on being un-bendable, bent with the wind that day.

My husband's co-worker and her family have a farm and every Fall they host a large cookout. This was the first year we attended as a family. I won't lie, I was nervous. There were about a zillion kids there and there was alot of places for my son to get in trouble, especially as darkness fell. Also, no one there really knew me and they didn't really know about John's autism and his quirks and well... it just made me nervous.

When we got there, I could tell John was nervous too. He was playing it cool, but he gets this face when he is surveying a new situation. He had the face.

John's eyes shot to the corner of the large building we were in. The hostess had awesomely set up a play area filled with toys and crafts for the kids. John immediately spots a huge dollhouse and makes a bee-line for it. He sat down and started playing with all the dolls and furniture and stuff. I glanced at my husband... and said "Are you okay?"... and he said "As long as he's happy". Bending with the wind. A moment. Thank you God.

As John's comfort level grew, he ventured outside and eventually discovered a barn filled literally to the rafters with hay. He also discovered a herd of other boys. The hay became a fort, the boys became his posse. When we went to check on him, he was with a group of guys running, yelling, chasing, tackling, and pretending to slay another group of guys only referred to as The Enemy. Their chief mission appeared to be avoiding the smelly girls on the swing set at all costs. They were covered in hay and dirt and having a ball. John, at almost 8 years old, seemed so confident, so carefree and, dare I say, so normal.

I didn't have to look at my husband to know he was beaming. And I get it. He is entitled to have hopes and dreams for our son too.

Listen, you gotta know, I don't care if my son plays with Barbies or trucks. Like all parents, I just want him to be happy, healthy, and God willing, independent enough to move out of our house some day. My Big Lug feels the same way.

But I am so thankful that the man I married has a strong enough sense of self that he can permit our son to be himself.

I am thankful beyond words.

Friday, October 28, 2011

Hard to me

Nosce te Ipsum.... Latin for "Know Thyself". The older I get, the more I live by this belief.

In my 40s, I have attempted to know myself. I acknowledge what I am good at; and what I am not good at. Try and do more of what I love; less of what I don't.

Recently I was asked to be on a "fundraising committee". I hate fundraising. I have always hated it. Without missing a beat I said "No. No fundraising for me." Know thyself.

I can't parallel park to save my life. I get the flop sweats when there are no other parking options & I am forced to jimmy into a spot, especially if anyone is watching me. I will unapologetically drive 6 blocks to find other parking spot. I don't care if I have to walk. Know thyself.

I get lost easily. So, GPS on, even around town.

I cry excessively at funerals. I bring a washcloth and not a tissue.

I'm chubby. I buy pants that fit.

I don't bake very well. I offer to bring the appetizer - never the dessert.


This is in contrast to my 30s, when my mantra was Fake Out Myself. "Sure I'll be on the fundraising committee.... Of course I will bring the dessert..... Give me a size 12 please...."

(This is also quite different from my 20s and my mantra of "Full of Thyself" but that's a whole 'nother blog.)

As an older mother, I am trying to instill this nugget of wisdom into my children so they don't have to wait until they need bifocals and Gaviscon before they know to play to their strengths. We all bring gifts into this world. Some are easier to identify than others. It's not to hard to spot the gifted athletes in Jr High gym class. It's a little harder to spot to the budding scientist or the natural born caretaker.

My little daughter is very soft-hearted and quite attached to me. She is starting to get invites for playdates and sleepovers. She isn't ready for a sleepover. She starts getting upset as soon as gets the invite... because she wants to go, but she knows she isn't ready to be away from home all night. "It's ok," I tell her, "you want to be with your mommy and daddy, that's who you are, that's how God made you. Someday you will be ready, but today you want to be home at night and that is perfectly ok." (and it more than ok with her father and I, as we aren't ready either!)

Recently, John has come to terms with the fact that he has autism. He is asking me lots of questions, hard questions. Sometimes, I don't have the answers. We were looking at old pictures and he saw a picture of himself at Chicago's Walk Now for Autism hosted by Autism Speaks. He was little & doesn't remember it. It opened the door to a big conversation about autism, what it means, why he has it and Molly doesn't, if it means he's stupid, etc. I wasn't ready for the conversation, but it arrived without an invitation and I had no choice but to have it right then and there.

Since then, we discuss it when it comes up and take it one day at a time. He processes it little by little. I hope he can make friends with it someday.

Truth is, I don't know why he has it. I don't know what the future holds. I don't know much, even though I am the mom and I am supposed to know everything.

I went to my son's Parent Teacher Conference today. Typically, a day I dread. However, today I was pleasantly surprised by reports that my son is excelling in all areas at school. In fact, his teacher tells me, he has really taken to writing and journaling. Record scratch Excuse me, come again? Getting my son to write has always been a huge challenge, but apparently in the last few weeks he is the second grade's answer to Ernest Hemingway. The counselor says he is choosing to express himself on paper, when his verbal communication fails him. This is a huge milestone for any child, especially one on the autism spectrum.

Before I left, the teacher shared a recent journal entry.

As I read it, in front of the gathered team, I felt the air get thick as I mostly unsuccessfully fought back the tears. Seeing his feelings on paper made them seem more real, somehow.

"That is why life is hard to me"

Not for me.

To me.

Indeed life is hard to all of us. Living amongst each other, sharing, learning, caring, earning, protecting, bargaining, grieving, obeying, co-cohabiting, leading, following... it's all hard. Marriage is hard, children are hard, money is hard, autism is hard. Life is hard.

At first, I wanted to be heartbroken. Who wants their 7 tear old to journal about how hard life has been to him? But then I reflected further. Life has been hard to John. Why should I be heartbroken that he is acknowledging the very truth of his life. Life has been hard, but joyful. Challenging, but rewarding. Painful, but full of laughter. He is merely owning the truth of his life. And succeeding in spite of it.

Nosce te Ipsum.

Know thyself.

Thursday, October 20, 2011


I occasionally am asked to speak at meetings, conferences and classrooms to discuss our autism "journey". I do not hold myself out as an expert in anything but my own life. But I do have a story to tell and I am somewhat of a story-teller. I have never had a fear of public speaking. In fact, I rather enjoy it.

It's funny that I get asked to speak about autism, because I have no idea what it is like to have autism. However, I do have a long term relationship with autism which started 17 years before I had children of my own.

When I was a teenager, I was a babysitting super-power. My father was a sailor and we lived on a Navy base. I paid for my first car (a 1976 AMC Hornet, thank you) with my babysitting cash. Which is impressive at $2 an hour. I was booked months in advance for the Holidays & if there was a large party in the neighborhood, it wasn't unusual for me to have 12 or 13 kids under my care. One day I got a phone call from a woman looking for occasional care for her disabled daughter. She asked if I could come for a visit, to meet her and her daughter and go from there.

I drove up her driveway and was totally wowed by the house... a huge, gorgeous McMansion on the banks of the St. John's river with a beautiful yard and a large wooden swing hanging from one of the tree branches. A small, nervous woman answered the door. She was well kept, neat, prim. Her house was House Beautiful beautiful. She invited me in, walked me to the sun porch, offered me some RC Cola and sized me up. She grilled me for 45 minutes while her daughter napped. Her husband was an Officer in the Navy and deployed overseas. She'd never hired a babysitter before. She had one daughter, Anna, age 4. Anna was "severely autistic". It was the first time I'd ever heard that word. If only I'd known what my future held.

Soon after, there was a HUGE racket coming from upstairs. It sounded like a herd of elephants. She looked at me and asked "Do you want to meet her?". I nodded and we walked upstairs. Anna's door was locked from the outside, a safety precaution. She opened the door and in this huge bedroom there was just one mattress on the floor, a few stuffed animals and Anna. Anna was rolling around on the floor, kicking her feet, making very loud animal noises, still wearing a diaper at age 4. She never registered our entrance into the room. She never looked at me or acknowledged me. Her mom looked at me gingerly... waiting to see if I was going to make a run for it. I didn't. "Are you interested in helping me?" "Yes, of course."

And that's how I became Anna's babysitter. I went for training on two occasions before the mom left me alone. The first time I babysat for Anna, on my own, her mother left for 15 minutes. And my guess is that she went to the end of the block and waited and came home. This was in the days before cell phones. Can you imagine how afraid she was to leave Anna with me? Anna couldn't speak... she could never tell her mom if anyone treated her poorly or didn't take care of her toileting needs or feed her. Eventually her mom would leave us alone for several hours at a time. I ended up being a dedicated caregiver to little Anna for nearly a year.

In that year, Anna never spoke a word to me. She never had eye contact with me. But she and I had a connection. I learned that the swing in the yard held the key to her calmness. I would sit on the swing and place Anna in my lap facing me. She'd lay her head on my chest and we would swing and swing and swing. I'd feel her ever-tense muscles relax, her anxiety would decrease and she would become almost... calm. In those moments on the swing I would sing to her and tell her long stories of Anna the Warrior, Anna the Explorer, Anna the Novelist. I don't know what she understood, but I could feel that she loved me and trusted me. And I loved her. I loved her very much.

Fast forward 20 years, and there I am, sitting in the doctor's office and hearing the word "autistic" again. Well, you can imagine the thoughts that raced through my mind as I searched by mental rolodex, climbing back through the years and the tangle of life experiences to try and remember everything I could about autism. My ignorance and fear combined to create easily the most terrifying moment of my life. I set out on a journey to educate myself in every possible way from that moment on. I would not be blindsided by autism, I would know about it, study it and stand ready to deal with it and yes, even love it.

So now when I am asked to speak about autism, I just stand and share what I know. I try and help demystify autism for anyone that cares to listen. Because fear is based on ignorance and it is so much easier to deal with something you understand.

That being said, I sometimes have a hard time explaining the way the autistic mind thinks. Therefore, I just try to use examples from our life to illustrate the interesting way my son views the world. I often share one of my favorite examples:

John has a love of filling out forms. Whenever he sees a form of any kind, he is compelled to stop whatever he is doing and fill it out. A few months ago, he was looking at a book from our shelf - A Children's Bible. In the middle of the book, there were some peachy colored pages called a "Personal Record" where the owner was supposed to write down important life events and people. He came to me while I was cooking dinner and asked me if I could help him fill it out. I told him I was busy with cooking and he should fill out the information he knew and later, I would help him fill in any missing information.

After bedtime, I found the bible sitting on the table, opened to the Personal Record. He'd filled out what he knew:

Name: John
Born: Blessed

Isn't that awesome? Instead of listing the date he was born, he listed his state of being at birth! Who does that??? John does. That's how he rolls.

What is kind of sad, however, is that if this were an SAT question, he would have gotten it wrong. Even though it's totally not wrong. It's incredibly, amazingly right.

I have come to the conclusion that autism isn't actually a deficit in brain function. Rather, it's an elevation of the human thought process. One we are just starting to understand.

He was born blessed. Wasn't he?

So was Anna.

And I am blessed to simply say I know them.

Friday, October 14, 2011

The Girl Who Cried California

I am blogging for one reason today and one reason alone. To purge my soul of the guilt I am carrying around with me. So, here goes.

First of all, let me tell you, I am a guilt expert. I was born with strong guilt genes. I was baptized into the Catholic church, which any good Catholic knows specializes in guilt (and if you don't know that, you aren't going to church enough and you probably feel guilty about that). Then... then I became a mother and both my guilt genes and my blue jeans increased substantially in size. So, I knows me some guilt.

How shall I begin? Let's see. Oh yes, my daughter. She has a teensy weensy issue with lying. It's been going on a while now. And she is the worst liar ever, which is why we are baffled as to why she insists on making it her life's work. It started when she was little. Her mantra was "Deny at all cost". I recall walking into the kitchen when she was 2. I see her and she is eating a cookie. Half of it is in her hand, she is chewing the other half, chocolate and crumbs all over her face. I say "What are you doing eating a cookie? It's almost dinner time." She looked right at me - blue eyes wide and shining and said "I'm not eating a cookie." When she said it, cookie actually flew out of her mouth. And yet, she stuck with her story that there was no cookie and looked at me with indigence that I should dare accuse her of the crime.

My husband and I were unequipped to deal with this issue. Our son, the oldest, is honest to a fault. He has no edit button and very little ability or reason to lie. So, when daughter came along, we were dumbfounded.

As she got older, she tended to lie to cover up naughtiness. There was a lovely pencil and crayon masterpiece drawn on the toy room wall. For two days she denied ownership of the painting. Finally, she broke down and confessed. Lots of tears flowed as she told us that she was the artist. But she did add that she hadn't done it recently, but rather a long time ago when she was little and didn't know better (the week before).

Lately, she's had a few cases of the Dramatic Flu in an attempt to get me to come fetch her from school. She misses me, she says. I miss her too. But I leave her at school. Until we see actual vomit, mom isn't coming to get her. Life's lessons are hard.

We've gone over it all a million times. We have told her about the boy who cried wolf, we've explained the virtues of honesty, we've punished her for lying and we've rewarded her when she is honest at every turn.

And for the most part, she has greatly improved and now regularly tells on herself and purges her soul of its lying ways. She is an incredibly sensitive girl and does not enjoy getting in trouble at all. I am proud that she is making steps in the right direction.

However, today. Today we had a backslide.

I knew something was up when I picked her from school yesterday. As she said goodbye to her classmates, there was quite a display from the group. Lots of hugs and "I'll miss you Molly"s coming from the group. She looked like a soldier heading off to war. It seemed odd, but I didn't think much more of it.

This morning as we were getting ready for school, I could see Molly's anxiety building. She didn't want to go to school, she didn't feel good, she needed a day off... etc etc... So, I took her in her room, snuggled her on her bed and said "What's up, honey? What is going on at school that you want to avoid today?"

After much hemming and hawing, it came out. And it went something like this:

"Mommy... I did something really stupid and now I don't know what to do about it. I told Jordon I was going to California today to see my Grandma and that I wouldn't be back until after Christmas. And Jordon was so excited that he told everyone in my class and now everyone thinks I am going to California and when I get to school today everyone is going to know I didn't go to California and no one will like me anymore."

And then she started sobbing... really sobbing. She looked so small and broken. And it killed me.

Who among us hasn't been in that very spot? When you dig yourself into a hole and you just don't know how to get out of it. And all you want is an answer, a way out, a magic pill.

I talked to her about lying and all the things a mom is supposed to say and then had her continue to get ready for school. She got herself together, but I could see she was miserable inside.

We dropped her brother off at school and headed to her school. I parked the car, got out and climbed in the back seat with my daughter. I put my hands on her shoulders and said "Molly, I am going to help you out today. I am going to tell your friends we aren't going to California after all. But I want you to know, I won't ever do it again. The next time you get yourself in a mess like this, you will have to face the music and tell your friends you made up a story. And I am warning you that they might not want to be your friend anymore. So, today I will help you out. But never again, understand?".

And she threw her arms around me and sobbed with relief.

Together we walked up to school and her class was waiting in line. I summoned Jordon over to us and said "Molly won't be going to California after all... spread the word". Jordon fist pumped the air and yelled "YES! I didn't want her to leave anyway!" and off he ran to spread the word like Paul Revere notifying the colonial militia that the British were coming.

I looked down at my daughter and winked. She gave me a hug and I left her there to accept the hugs from her classmates that were happy to have her back from the trip she didn't take.

So, all in all, not my finest parenting moment. Any pro would tell you that I should have let her accept the consequences of her behavior. But today, I threw her a lifeline instead. It probably wasn't the right thing to do, and that's why I am feeling a little guilty. But I did it anyway. And it felt pretty good.

And that's no lie.

Tuesday, October 4, 2011

Big Bang Theory

I was teenager during the 1980's. Madonna, Cyndi Lauper, Michael Jackson, Prince, acid washed jeans, palettes of eye shadow and bangs to the sky. I was a pretty typical teenager. I loved music and saved babysitting money to buy the latest albums (shut up, I'm old). I stretched our home telephone cord within and inch of its life so I could retreat to the privacy of our pantry to talk on the phone. I had friends and good grades and lots of extra curricular interests. But I was a chubby teen and I was terribly self conscious. There were no two words I feared more than "pool party". I am certainly not the first teen with body issues, I won't be the last. One particular feature I hated was my "high forehead". I had been wearing bangs my whole life to reduce its ginormity. I was so jealous of girls with normal heads that could wear their hair off of their faces with confidence. One day... during my Sophomore year of high school (referred to as my Suckmore Year, but that's another blog for another day), encouraged and bolstered by the gigantic and fully exposed bangless forehead of 80's singing star Jody Watley, I styled my hair with my bangs off of my face. I walked out of the house that morning, newly confident and feeling for the first time the sun and wind on my forehead.

I walked into school, went to my locker and started the dreaded walk through the "Senior Locker Area" on my way to homeroom. I passed a group of jocks that were gathered in an informal huddle and quickly walked by, avoiding eye contact. Then... I heard it. Clear as day. One of the boys said "Nice forehead" and the whole team laughed. Even typing those words gives me a teenage pit in my stomach. I was so horrified. I walk/ran to the nearest bathroom, locked myself in the stall and furiously started breaking through the layers of Rave Mega Hold hairspray in an effort to return my bangs to their rightful place - covering my perceived deformity. I was late for first period that day. I was so embarrassed, so humiliated.. that I didn't ever tell a soul. Not even my best girlfriends.

That was 1984. I haven't worn my bangs off of my forehead since.

It's so stupid isn't it? Every time I pull my hair back to wash my face or lay in the sun, I look in the mirror and hear it: "Nice forehead". Who cares what some dumb jock said in 1984? I do, I guess. Because even as I type this, I feel vulnerable. Why? Because words hurt. They resonate deep within and they are recorded in our brains. One guy, a faceless voice from a pack of idiots, has governed my hair style for 27 years. Isn't that something?

The other day, I picked my kids up from school. There were some older boys hanging out waiting for their ride I guess. I don't know how old they were, maybe 12. I was talking to one of the other moms and my kids were running around a tree acting silly. The older boys were in the tree, sitting on branches, rolling their eyes and cracking wise - which is the chief job of the 12 year old boy.

Now my son can come off a little odd to other kids. He is nasally and a little stiff. Also, he has the vocabulary of a 40 year old chemistry professor. I yelled to my kids to head to the car and they took off running. As I walked from the tree, one of the boys yelled to my son "Run Forrest Run". I don't know if my son even heard it, and frankly he wouldn't get the reference. But I heard it. And my face got instantly hot and my hands started to shake a little and it was 1984 all over again. But I wasn't 15. I was 42. And I wasn't the victim, I was the protector. And he wasn't Forrest Gump, he was my son. My life.

Without thinking, I spun around and marched my high forehead right over to the tree. I looked up to the two boys and said "Did you just say "Run Forrest Run" to my son?". I was using a very quiet voice, but I must have looked mad, because they looked scared. One kid confessed and sheepishly said "Yes, it was me. I didn't mean it." I said "Then why did you say it? In case no one ever teaches you this, boys, let me teach you today that words hurt. Now, don't say mean things ever again, you hear me." And I flipped my hair and walked to my car. (A hair flip is my signature move during any confrontational situation).

OK, so I am sure they didn't listen to me and I am really sure that they likely said a mean thing the very second I was out of ear shot. But I felt better. Maybe my words will resonate with them someday and make them nicer people. I can dream, right?

I didn't graduate from the high school I attended my Suckmore Year. I transferred to a high school of performing arts the following year and graduated with honors. And even though it was the best decision of my life, it killed my fantasy of returning to my old high school for my 30 year class reunion and finding Mr. Jock, eyeballing his receding hairline and muttering... "Nice forehead". ;)

Sunday, October 2, 2011

House Dress

When I was pregnant with my first baby, I actually believed he would arrive on or after his due date. All of my friends that had gone before me down the baby-making path had shared their tales of woe of being painfully, miserably overdue. I'd heard a hundred old wives tales all guaranteed to bring on labor... spicy foods, castor oil, walking, a bumpy car ride, raspberry ginger tea.... and finally: sex. That last one I suspect was invented by a frustrated spouse who was willing to spin any yarn to get a little nookie. Anyhoo, I was happily sitting in my office, a cute little baby bump between me and my flickering computer when I stood up to go pee for the 100th time that day and ... ta da .... my water broke. I was only 35 weeks pregnant. I hadn't even packed my bag (It was on my calendar to do on Week 36 - the RECOMMENDED WEEK YOU PACK YOUR BAG!) There was no plan, yet. I couldn't even say "Ricky it's time" using my best Lucy Ricardo voice because "Ricky" was 2 hours away. So, I did what any modern female does, I closed my laptop and drove myself to the hospital, waddled in and said "I think I might be having a baby". (If I could turn back time, I would have driven to McDonalds first because as it turns out I was on the ice-chip diet for the next 48 hours. Oh how I hate you, ice chips.)

All this to say, I spent the next three hours on a gurney making phone calls on my Blackberry and sewing up loose ends. One of calls I had to make was talking my husband through packing my bag. This, my friends, was a disaster of epic proportion. Maybe he was being nice, but the underwear he packed were the teeny tiny ones that landed me in this predicament in the first place. Seriously? So, I surreptitiously called my mom and had her bring a bag of rations. Without a word, she hung up and began packing. She needed no further direction. She packed ginormous underwear that came to work not play. She brought me fat, cozy socks. She packed some nice smelling lotion, a scrunchie and a hairbrush. She even threw in some Jean Nate in case I needed to splash myself with a little Wow! Lastly, she tucked in something she called a "house-dress". She said she had an extra one in her drawer that I could have. It was perfectly aged soft cotton, and snapped up the front. "Perfect for nursing!" my mother exclaimed. I'd never owned a house-dress. And frankly, I felt like I was a little, eh hem, young for such a frock. And since I was currently wearing a hospital gown, I tucked it back in my bag for later examination.

Well... 36 hours of labor and a c-section later my son was born. He was tiny, and severely jaundiced and struggled with some other issues requiring a rather lengthy newborn hospital stay of 8 days. The night we got home, I took a nice shower, grabbed some industrial underwear and a hideous nursing bra and dug around to find something, anything to wear. I was sore from top to bottom and I also had an unplanned incision in my abdomen. And, shockingly, I still looked kind of pregnant. And then I spied it.... With it's delicate pink floral pattern and flutter sleeves. The house-dress. I pulled it out of my bag and examined it. It was so soft and flowing, loose and easy. I pulled it around my shoulders and snapped it up. Ahhh.. it was pure Heaven. Nothing binding or tugging. I LOVED my house-dress! I'll never wear anything else ever again!!!!! ALLELUIA! Until. Until. I looked in the mirror. "Well hello there, Mildred, how's the sciatica?" Oh well, I thought, it's just around the house. Right? It's a house dress. So, I casually strolled out into the living room, acting like I'd worn a house-dress every day since my honeymoon. I wish I had a camera so I could show you the look on my husband's face. It was a combo platter of horror, disgust, and fear. He knew not to say a word in my fragile, hormonal, lactating state. But some conversations don't need words. I knew. I knew that if I ever wanted my husband to ever like me in a girl-way ever again I needed to take that house-dress off and pretend it never existed. And so I did (the next morning... Come on, I was too tired to change clothes).

And so I laid the house-dress to rest in my bottom right dresser drawer. From then on I donned the more age appropriate post baby uniform of sweats and t-shirts. My husband no longer looked at me with scared eyes and all was right with the world.

But. I have to tell you the truth. Whenever my Big Lug goes out of town for work, I get that bad boy out and put it on. I pull the drapes and spin and twirl around the house like some crazy old spinster in a wedding dress. I love that damn house-dress. I love it, you hear me. It makes me mad we have to hide our love. We're like the Romeo and Juliet of the garment world.

And folks, on my 70th birthday, I am putting that house-dress on. And I am going to wear it. Everywhere. I might even pick up an AmeriMark catalog and order a few more.

And I can't wait.

Friday, September 30, 2011

It's what you know

I have discovered something about myself. For some, when the going gets tough, they reach for their pens and journal their deepest thoughts. I know lots of women that write lengthy letters pouring their hearts out... letters they never, ever plan to send.

I am not that girl. Not anymore.

When things get tough - I avoid the pen. The last thing I want laying around is a written reminder of how crappy a situation was. Somewhere in this house I have a box with letters in it. Remember letters? In the days pre-text and pre-email I was a letter writer. I had really nice, swoopy girly handwriting and reams of earthy, edgy stationary. This particular box of letters is buried somewhere in a closet ... and are the byproduct of a rather dramatic and lengthy relationship I had pre-marriage (obviously.. ha ha... or else this blog just took a totally different direction). This was the relationship that was so fraught with drama that it didn't know what to with itself if a weekly breakup didn't occur. I came across "the box" when we were moving. I was 9 months pregnant with baby 2. Baby 1 was 16 months old, non-verbal and not developing according to all the charts. I was a sobbing, puffy hormone with feet. Swollen feet. That I could only see with a hand mirror and some effort. I opened "the box", saw the stacks of letters, pictures, ticket stubs and old schmaltzy birthday cards and realized in an instant what it was: It was my entire past relationship in a box. You could literally smell the drama when you took the lid off. (Interestingly, drama smells a little like Drakkar Noir. Who knew?).

I am telling you, I couldn't get that lid back on that box fast enough! A casual observer would have thought I'd spied a python inside. I was already sobbing at Kodak commercials ... I knew my frail pregnant self couldn't handle "the box". So, I buried it so cleverly in a closet that to this day, I am not sure where it is. Which is for the best. May that box rest in peace. I like to think I spent my single years as a cool Martini-swilling sophisticate that doled out sex appeal and one liners like the Midwest's own Carrie Bradshaw. I don't need no stinking box to tell me a more accurate version of events. My memory is a much better version. Interestingly, the older I get, the better my version becomes. I predict by age 70 I will actually introduce myself to strangers as "Carrie Bradshaw" and believe it to be so. Here's hoping.

OK, so I have been avoiding my blog lately. Not on purpose, but it's been kind of a crappy few months and I didn't want to write any of it down. Autism is a big fat roller coaster and we spent a few months going down the hill. But things are looking up again and I am done feeling sorry for myself and so, here I am.

Actually, I was here a few weeks ago. Trying to think of what to write about. I just couldn't think of ANYTHING to say. Which is weird, because the joy in writing for me is that it has never been difficult. I've never had to think to find something to say, I only had to remember when to stop.

But I had a case of writer's block. And so I'd shut my laptop and watch a little TV and hope that something would unclog my clog. Tonight, that something came along.

Every night before bed my son requests that I tell him a story. It's a ritual started years ago that I am now sort of stuck with. I lay down with him for a few minutes and tell him a story about a boy named John. John is a great little kid that happens to have autism and he goes on lots of adventures. He's been to China, won an academy award and once even met the President. So, every night I have to come up with an adventure, off the cuff, at bedtime. And trust me, there can't be any re-runs. This kids remembers stories he heard in utero I swear to God.

So tonight I snuggle down into those blue fleece sheets and lay next to my first born. I take a deep breath and inhale the smell of his shampooey hair and close my eyes to try and think of tonight's plot line. My son says to me, "Mom... what are you doing?" and I said "Just thinking of a story... trying to come up with something good". And then... he took his hand and placed it on my forehead and said "Mommy... The best stories don't come from here," He placed his hand on my heart & said, "They come from here. Don't think about it. Just know it. It's not what you think that matters. It's what you know."

I know what you're thinking. You're thinking I just made all that up. I swear to God... I didn't. He said it, with full eye contact, and total sincerity.

And me? Well, let's just say I'm smart enough to recognize a message from God when I hear one.

And just like that. My clog unclogged. My block unblocked. And I stopped thinking. And just wrote about what I knew.

It's good to be back.

Monday, July 11, 2011

We're All a Little Crazy

Autism is an interesting animal. Early on, it's signs and symptoms are pretty clear. Usually, you have a distressed toddler that can't figure out how to communicate. At all. Not only can they not talk, they don't know how to point, gesture, drag their parents to the desired object. Communication is a mystery to them. So, instead, they just stand there and have a "meltdown". It's a scary, embarrassing and very difficult time for the parents and the child. There is a great divide that exists between you and your child. Your little toddler spends all their time retreating within and the parents spend every ounce of energy pulling them out.

I think of my son's years between 1 and 5 - and it's all a blurry fog of tears & frustration combined with triumphs & mini-successes that we celebrated like he graduated Harvard. When I meet a parent in the throws of toddlerhood autism, my heart aches for them. Because it is a very hard time. But I always say to them - with absolute confidence - it DOES get better. Time, maturity, age, developmental progress, education... is the friend of autism.

It is around age 5 or 6 that autism becomes much more covert. As the child with autism gets older, he learns to "manage" his autism. He learns that some of his crazy behaviors, desires, and obsessions are more appropriately enjoyed in the privacy of home. He also learns that other kids will make fun of him if he brings his brand of crazy to the table. (No disrespect.... because God knows I am in love with the autistic mind and it's amazing capabilities.... but some of the behaviors and compulsions are indeed crazy. If you don't believe me, come and stay at our house for the weekend).

And so begin the years when autism mainly blooms at home. And you start hearing people say "I would never even know he had autism". And that's ok with me. I don't want my son to be defined by 6 letters. He is many things, and autistic is just one of those things.

An interesting and brilliant coping mechanism kids with autism have is that when the going gets tough, they assume the words and personalities of fictional characters. When my son was little, he could insert a line from any TV show or movie into a conversation so seamlessly that 90% of the time the listener didn't detect the plagiarism. Awesome, right?

Older kids & even adults with autism still rely on this method to cope. However, it's on the down low. For instance, today my son was having a rough morning. So, he went to school as Chris Kratt from the TV show "Wild Kratts". Now... he didn't wear a Halloween costume or anything. He wore regular jeans and a T-shirt. However, this mom knows that his choice of jacket (orange) and tennis shoes (black) was critical to the "look" of Chris Kratt. He will spend the day pretending he is Kratt especially when the going gets tough (recess). He will have a whole show going on his head. He will draw diagrams during art class that Kratt needs to accomplish his mission. He will eat his lunch and picture himself in the jungle tree eating bugs and leaves.

He is not delusional, he knows he is imagining and pretending. But it's more than "fun" for him, more than a game. It is the way he socially navigates the very difficult-to-navigate first grade. When he is Kratt, "John" is off the hook for a few moments. Ahhh bliss.....

So, lots of times, you may see an autistic person muttering to themselves, deep in thought, seemingly checked out. They aren't insane... they are brilliantly, amazingly COPING.

It's actually quite something.

Friday, July 1, 2011

That's What I Want

I will be 42 years old in September. Some days I feel really old. Some days I feel really young. Most days I feel about right.

It's hard for today's generation to imagine what life was like when I was growing up. We lived a life without computers, phones (for several years we didn't even have a land line), internet, cable, iPods, movies on demand, or camcorders. We had one car, one TV, one bathroom and no microwave. Most moms I knew didn't work outside of the home and I had only one friend whose parents were divorced (scandalous!).

The joy of our summer involved loading up into our family's Pinto Station Wagon and heading out to the farm to visit my Uncle Johnny and Aunt Suzanne and their eight children. Can you imagine? Eight kids, three bedrooms, one bathroom, and one income. And they didn't even have a reality show! They lived down the gravel lane from my Uncle Gene and Aunt Judy and their four kids. They had a big house and a trampoline that was level with the ground - built over a hole. So you could jump and jump and never fall off. Genius.

We would arrive at Johnny and Suzanne's house - jump out of the station wagon (quickly, because we were unencumbered by seatbelts) and run free. My cousin Tabatha and I were the same age and best friends since age 5. When I was really little, we lived on the East coast and when I was in Kindergarten we moved "back home" to Iowa. I remember the DAY I met her. She stood there, skinny and sorta quiet with tan skin and straight brown hair. I walked over to her with my pale skin, chubby cheeks and big laugh. I hugged her and pronounced us "Best Friends". And so, we were. Still are.

Tabatha and I would quickly take off and try to find a place where no one could find us. We were always hiding from older, annoying big brothers and cousins and ditching the younger ones. We climbed trees, hid behind the bushes, ran into the barn. When my uncle would line up giant bails of hay in the field, we could play "tag" on top of them - jumping from one bail to the next. Without fail, the older ones would shove us in between two bails and leave us screaming for help because we were too short to climb out. In the summertime, we swam in the above ground pool. It was actually a horse trough filled with hose water. And we LOVED it. At night we played Kick the Can or caught fireflies in Butternut coffee cans. Before we came in the house, in order to knock down the first layer of dirt we were often given a preliminary shower in the yard, via the ice cold hose. Then we all took baths - 3 at a time. If someone had to use the facilities while you were in the bath, the rule was to cover your privates with a wash rag.

Evening was when the real fun began. We kids played in the bedrooms - we did a lot of make believe. We did "plays" for the adults; we played church complete with communion wafers we made out of flattened Wonder Bread. I often swiped a Velour robe from my Aunt Suzanne and wore it in my role as "Priest". Even then I was a women's libber. ha ha

The bathroom had two doors. One went into the bedroom where we played and one that led into the kitchen where the adults were. Tabatha and I would often peek out into the kitchen and spy on the adults.

We'd see all the grown ups gathered around the kitchen table... ashtrays & beverages overflowing. There was usually a radio on and sometimes even a little dancing. Games or cards came out at times. Mostly I remember the laughing and the animated, lively conversation. It seemed like someone was always telling a funny story. This was more than family, this was friendship at its finest. These were all the people I loved most gathered around a vinyl covered table. As a little girl, peering into that 1970s kitchen, I remember thinking "When I grow up, that's what I want. I want to be a mommy. I want to laugh and dance and tell stories with my family. I want to be cool and groovy and stay up late. That's what I want."

Today, we laid my Aunt Suzanne to rest. Five years ago, she suffered a severe brain aneurysm. Since then, she'd been unable to walk, one arm was paralyzed, she lost her ability to speak for the most part. She required around the clock personal and medical care. During the past five years, her husband took perfect and constant care of her. He put his own needs on hold. He remained by her side ten to twelve hours a day. He fed her, talked to her, bathed her, took her on field trips. He never wavered. Never complained. He was a dedicated and loving spouse upholding his end of the marriage vows each and every day. He never lost hope, never gave up. He was a true example of what marriage is and should be.

In her final days, her weak body got pneumonia and simply was not strong enough to fight anymore. Finally, the pain left her body and she gracefully and beautifully went to her Heavenly rest. Her husband John by her side. Even in death, he stroked her cheek and kissed her goodbye. They'd been together for 56 years. Till death do us part? Not even close. Long past death, they will be together. How could they not be?

As I watched my Uncle Johnny at the funeral... surrounded by his eight children, their spouses, his eighteen grandchildren & great grandchildren... and seated to the right of his beloved wife's casket.... I could FEEL the love in the air. I am not being dramatic. It made the hair on my arms stand up. It was, and is, a love story for the ages. And I thought to myself...

"That's what I want."

Who wouldn't want that?

Rest in peace, Aunt Suzanne.

(carved in the back of her teenage bedroom vanity)

Thursday, June 23, 2011

The View from Above

"One of these things is not like the others, one of these things just doesn't belong..."

Remember that from the old "Sesame Street" days? Or was is it "Electric Company"? Regardless, it was one of those shows on Channel 12, the only kid's channel we had growing up. We not only didn't have a remote, we had to turn the channel with pliers. It was a different time. But back to my point.

I am writing this from our family of those fun, family times with lots of cousins and sunshine. I don't see my nieces and nephews very often. Not by choice, but by geography. When we all get together, all the kids have to acclimate themselves again to being together and each child works to establish his or her role in the family dynamic. It's funny to watch last year's goofy tween show up as this summer's sullen teen. So many changes, in such a short a time. One nephew that couldn't get enough hugs and kisses at Christmas, is embarrassed that you even look at him on 4th of July. That's how it goes with kids.

Tonight, I am watching 7 kids - my two plus five others - while the grown-ups attend a graduation. When I made dinner I was channeling my inner Kate Gosselin, but with better hair and a sweeter disposition.

The reason I am home is by choice. There was the option of a teen babysitter, but with my oldest son, a strange babysitter in a strange town in a strange house is a recipe for a very familiar disaster. Rolling with the punches has never been his forte'. So, instead I offer to stay behind to try and prevent any disasters from occurring that could disrupt the family fun.

It’s interesting to watch my son navigate the social scene of a family gathering. Among the cousins, there is a healthy blend of competitiveness, camaraderie and good-natured ribbing. Watching John is like watching a clumsy American attend a formal state dinner in a foreign country: Well intentioned, overly eager to please... but totally sticking out like a sore thumb.

Nothing about conversation, chiding and banter come naturally to him. He will start talking to a fellow 7 year old about the electromagnetic field and how fascinating it is and totally fail to notice that the kid is glazed over, bored and confused by the Jr. Scientist before him. He will bring up a similar topic to older cousins and I will watch as the tween girls exchange smirks and giggle at his nerdiness, his oddness, his scientific approach to life.

And I, as his mother, want to run over, grab him away from all of them and scream “STOP MAKING FUN OF HIM!!!” But I don’t. I sit, and watch, and die a thousand times inside. All moms want to protect their children, but not protecting them is what we have to do. We have to let them suffer through it, fight their own battles and God willing learn from their mistakes.

There is a term currently in vogue called "Helicopter Parenting"... and usually it's the poor Mom that gets hit with the even more charming name "Helicopter Mom". Helicopter Moms are moms that sort of hover over over their children and become overly involved in their lives. I am a card carrying Helicopter Mom. I don't want to be, but if I am to be honest with myself, I can't deny it. I suspect I am the only person that watched "Boy in the Plastic Bubble" with 70's John Travolta and thought "Damn, his mom is lucky, that kid is SAFE."

Here is the reason (excuse) I helicopter: I can't stand the thought of people making fun of my kid. And. They do. Whenever I observe my son in public, and people don't know I am hovering nearby (nyuk nyuk), I see it, I hear it. It's there and I hate it. So, I hover and prevent it when I can. I'm old fashioned, I prefer people make fun of us behind our backs.

Here's the beauty of autism. My son is blissfully unaware that people are making fun of him most of the time. Because he doesn't understand nuance, sarcasm and non-verbal responses - he usually just drones on & on in cerebral bliss while the poor listener rolls their eyes and yawns.

So, maybe I hover to protect my own heartache. I am, after all, incredibly & ridiculously soft-hearted. I once overheard a 6 year old at the YMCA call my kid a "weirdo" and I cried all the way home. I am embarrassed to even admit that. But that's how I roll. Maybe I hover because I am a little bossy and mico-managing. ha ha I can hear my husband agreeing from here.

Whatever the reason, I really need to probably cut it out.

And I am going to.

I promise.


Now, where the hell is my landing pad?

Monday, June 6, 2011

Molly the Brave

I was in the doctor's office one day getting weighed and measured at one of the several hundred trips to the ObGyn you make when you are pregnant. It was my second baby in as many years and I was an old pro. I was standing there while the thin, perky nurse jotted down a few things in my chart. I noticed that, written on the outside of my chart, in large red alarming marker strokes were the letters AMA.

AMA? American Medical Association? American Music Awards? I was confused. So, I made a giant mistake and asked.

Advanced. Maternal. Age.

I was 35.

Not a hundred and thirty five. Thirty five.


Looking at the girl next to me... standing there with her minuscule baby bump poking out and her 9th grade homework in her hand. I thought to myself "... and I'm the one considered high risk... hurrumph".

All this to say, I was, and am, an older mother. Which brings with it some sweet perks on the pregnancy front. Like frequent and awesome ultrasounds in 2D, 3D, WD-40, you name it.

I will never forget laying there while the ultrasound tech roamed around my belly with her goopy wand and then pointed to the screen to show me my tiny little baby with tiny little baby girl parts.

A girl! A daughter! My daughter. My very own daughter. I instantly felt like my insides were filled with hot caramel and I could almost feel my heart double in size for this baby inside me, this first precious and perfect daughter.

Now... this sweet little girl was certainly sweet, but she was not little. She was a "Scheduled C-Section" and she went FULL term. It was a breeze of a delivery, but when they showed her to me, I was in shock. She was such a big baby - soap opera big. Almost 10 lbs. But she was perfect... with enormous blue eyes and one little dimple on her right cheek. And the minute she was born, I felt such relief and I also felt super skinny. This, of course, was pure delusion, but with a little help from my old friend Morphine, this skinny illusion lasted several glorious hours.

I named her Molly. I knew she was a Molly my whole pregnancy. She came out and she looked like a Molly. She still does.

Molly arrived at a time in my life when I needed her most. She's been my constant side-kick for nearly 6 years. Molly's only true regret in life is that the doctor cut the cord. She'd prefer it if we were actually still connected.

But what she doesn't understand, and won't for many years, is that our connection is stronger even than a physical one. She and I both are the youngest of two children. We both have older brothers with disabilities. And we both have a flair for the dramatic. Shocking, right?

When she was very little, one of my dear friends gave me a book called "Molly the Brave". I liked the title and all that it implied. I really wanted my daughter to grow up braver than I. I may have seemed fearless to outsiders, but in truth I was afraid (and still am) of new situations, new people, new routines. I mask my fear with jokes and faux bravado, but I still am not very brave and therefore rule my life with planning and preparation, to avoid occasions of surprise.

But guess what? Molly, as it turns out, had plans of her own and developed a personality independent of my micromanagement (the nerve). She really isn't so brave after all. When she is comfortable, she is the life of the party. But walk into a room of strangers and she is practically back in utero. At the school talent show, she folded like a deck of cards under the pressure. Which shocked me because she is such a ham at home.

Instead, Molly has some other traits that have emerged in her nearly 6 years of life... She is the kindest little soul on the planet. She really truly cares about people, animals, strangers, celebrities, plants, dandelions, gnats. She pleads the case of all things living or dead. She doesn't think twice about sharing the last cookie or letting someone else go first. She is generous beyond words.

Having a brother with special needs isn't always easy. Yet Molly handles it all with extraordinary grace.

The other morning we were walking into church. There were two collection envelopes that day... one for the regular weekly collection and one special collection. The special collection envelope was blue. My kids get great joy out of putting the envelopes into the collection basket. I - without thinking - handed the regular one to John and the "blue one" to Molly. John decided he had to have the blue one or life as we know it could. not. go. on. I told him that I had already given the blue one to Molly and next time there was a special envelope he could have it.


Did I mention this all went down inside the church. The big, old, otherwise silent Catholic church? Did I mention all the old parishioners were giving me the "Back in my Day..." stare?

Then he stopped yelling, bowed his head and sobbed.


And then my daughter... who is merely 5 years old.... crawled over my lap and slid the coveted blue envelope into John's soaking wet, tear filled hands. He looked up and said "Really?" and she said "Sure, why wouldn't I give it to you? I don't want you to cry anymore, Johnny."

I was never so proud. Her purity, her kindness, her unselfishness in a world where selfishness is king - brought me to tears.

We were quite the sight, we three. John red faced and still hyperventilating. Me - smiling and wiping my own tears. And between us - our youngest family member: Sweet, precious Molly...

Molly the Kind,

Molly the Generous,

Molly the Loving,

Molly the Brave.

Friday, June 3, 2011

Story Teller.

When my mom was recovering from cancer (how's that for an upbeat beginning), I moved in with my parents temporarily to care for her. There was a hospital bed in the living room and I slept on the couch. My mom was recovering from a 16 hour life-saving and life-changing surgery. It was a scary time.

During the first few weeks, I am not sure what was going on, but the combination of heavy medication and anxiety caused my mother to wake all through the night and have lengthy conversations with me. Most of which made little sense.

One particularly long night, my mom woke up crying hysterically. She couldn't sleep and had herself convinced she would never, ever fall asleep again. I was exhausted and desperate.

I went into the kitchen and came back a few minutes later with a pill. Here is the conversation:

"Mom, I called your Oncologist. She told me to give you this pill. She told me to make sure I gave it to you laying down, because it works very fast. It is a potent powerful sleeping pill."

So she took it. And within 3 minutes she was sound asleep and remained asleep until morning.

Confession: I didn't call the Oncologist. I didn't dash out to Walgreens at 2 a.m. I gave my mom a Vitamin C pill I found in her cabinet. I gave her a dose of permission. Permission to put her brain to sleep.

For the next 3 weeks, I gave her a "sleeping pill" before bed nightly. It was a miracle. She slept like a rock. So did I.

The brain is a powerful thing. Its belief guides the body. Its fear paralyzes; its optimism cures.

My son once told me that his brain moves too fast. He said he feels like his brain is rolling down a hill and he can't catch it. Sometimes, his hands and feet follow. Lots of times he looks so confused when he gets in his hands and feet arrived at the scene and caused a bunch of trouble before his brain showed up and put a stop to the shenanigans.

My son also wrestles with some OCD-esque issues. OCD is no way to live. It's a tortuous existence where your thoughts just recycle and replay to the exclusion of any new thoughts. In our house, we call it "getting stuck". If my kids had any idea what a record album was, I would tell them John's record was stuck and his needle needs a nudge.

So, in order to gets John's brain unstuck, I tell him a few... eh hem... tall tales.

For instance, I tell him that his pillow has a fast side and a slow side. At night, when he can't settle down I flip his pillow to the "slow side" which he now believes miraculously slows down is brain.

When I am sick, he gets very nervous & anxious. I tell him orange juice always makes me feel better. And he pours me a glass with shaky hands and, with that little bit of control over an uncontrollable situation, magically, HE feels better.

I have a secret location in the house where I keep objects for safe keeping. No one knows this location but he and I. When he is obsessed over an object and wants to take it to school (a no no) we store it in the super secret location and... he can breathe.

When he is consumed with a thought, an idea, a costume, a character, a gadget... We write it down on paper. We get it out of his brain, and onto a notepad. I tell him "Johnny, tell your brain it doesn't have to work non-stop to remember this, because now we have a written reminder." When he gets his idea written down, I see him physically relax since as his brain has been given a temporary respite from that particular thought.

Such trickery, you say? Perhaps. But in this life you do what you have to do to get by. Whether it's a sugar pill, a magic pillow ... or hanging on to your pre-pregnancy jeans fully believing you'll wear them again.

We all tell our brains stories when the reality is just too much to bear. "He's in a better place," "It's God's Will," "Everything happens for a reason."

My husband fears my son will resent me when he grows older and learns of my little white lies. But, I know that he won't. I know because he and I have had a perfect symbiotic relationship since birth. When he couldn't speak, I provided his words. When he was baffled by figures of speech, I translated. When he couldn't describe how he was feeling, I read his face. When the world was cruel, I held his hand and showed him how to be brave. And when he needed me to weave a story and put his brilliant, over worked, insanely detailed mind to rest... I told one.

I am a story teller. And I know he will love me for it.